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Please tell me it's my fault...

Posted , 5 users are following.

karen48559
karen48559

Second attempt at reducing, 8 days in and the pains are back. I feel I'm almost back to where I started. Stiffness on waking, ankles, wrists and lower back is just ouch. I'm so fed up this morning. I don't want to go back up to 30mg again, the palpatations were too much to cope with. My other half says I'm doing too much. He's probably right. No he IS right. If I really slow down and stay on 25mg will it subside?

0 likes, 12 replies

12 Replies

  • Silver49
    Silver49 karen48559

    Posted

    It sounds like you may well be doing too much if someone else in your household is saying that. How much is too much varies from person to person. I don't think you should blame yourself. It is all too easy to know it's too much when we suffer later. Hindsight is clear sight. What exactly are you doing? I know when we feel good we are more inclined to overdo it. I no longer rush about doing everything in one go. Pace yourself may need to become your mantra too. I have a break in between tasks. Decide what are the most important things in life. I worked with the terminally ill and I never came across anyone who said ,' I wish I'd done more housework or gardening'. I found it difficult at first but I look at my week and if it's busy with  activities which I enjoy then the housework can wait so that I can cut the pain / discomfort to a minimum. I also sit when I am out if I find standing too much. I want to get better so have decided to be sensible. I think it may be worthwhile looking at your day/ week and planning it around what is necessary and what is pleasurable. Eileen recommends clearing the decks and not having a lot on in the reducing week. It worked for me. I hope it eases soon for you.
    • karen48559
      karen48559 Silver49

      Posted

      Thank you Silver, I think the normal 4am wake up and a few hours of being alone with the ache left me feeling sorry for myself. I rarely get more than 4 hours sleep now no matter what time I go to bed and I wake up bouncing like a ball, wide awake, full of energey. I've always been a doer. It's what I am. My husband has thyroid problems and cfs so I have carried and cared for 10 years. I get very frustrated when things are left undone. And the pred has made me more hyperactive. My daily job is easy physically. My office not 2 yards from my front door. Mostly admin with light physical duties such as a lovely walk around the 4 acre grounds and checking the swimming pool is ok together with supervsing any contractors we have on site. But it is unpredictable. I can plan my day only to find it goes to pot with an unexpected problem. I don't rush anywhere any more either. But yes this weekend I did do some lifting. We had new mattresses for the spare room delivered and so the old ones had to be shifted which we did together and into the car to the tip. But I didn't do a stroke of housework this weekend to compensate. I sit after a task for as long as the task has taken. Usually reading or surfing the net or watching mindless tv or the radio. I did some laundry but no ironing. Little gets ironed these days. I'm just going to have to try a little harder aren't I? Thanks for your support though guys. It does more good than anything elsse I know because I know you understand. x
    • Silver49
      Silver49 karen48559

      Posted

      It sounds idyllic where you are. It's lovely where I am and I appreciate that. It's not easy when you have to ' carry and care'. I know that one too and it's harder when we ourselves are less able. Sometimes I just shut my eyes to what would once have been done by me as I now know it's not worth the pain and discomfort. I suspect all the mattress moving will have caused some if not most of the pain. I found the higher dose of steroids made me hyper and wide awake early. I cut all the caffeine and that helped the palpitations. I also made myself a cup of camomile tea when I was up early. I put on the minimum of light and sometimes I could get back to sleep. I am now on 11mg and my sleep pattern is more or less back to normal. 
    • karen48559
      karen48559 Silver49

      Posted

      We are very fortunate where we live, I appreciate it every day. I too have cut the caffeine and have a sleepy tes from Pukka I use. Since dropping from 30 mg things have softened a little so I am looking forward to an even lower dose and getting more relief from side effects. Off to work now feeling a lot more positive thanks. 
  • jillyy1955
    jillyy1955 karen48559

    Posted

    I've just had a major flare up really unhappy as I'd got down to 11mg thought I could ride it out but I couldn't but only upped to 14mg and that worked instead of jumping all the way up you could try upping by 2 mg if that is going to work it will do so in a few days - good luck and yes you must rest lots 
    • karen48559
      karen48559 jillyy1955

      Posted

      I'm sorry to hear this Jilly. I may well just go pop a couple of 1 mg tablets to see. The pred won't let me rest. It's turned me into a whirly gig! x
  • jean39702
    jean39702 karen48559

    Posted

    Oh Karen, you sound like me about a year ago.  I started on 40 mg for PMR (and and now feel GCA without temporal involvement).  It was the day before my 65th birthday.  I went from an old woman in agony all over to a teenager overnight.  I was up at 4 am with energy to burn and burned it.  Doctors had me reduce by 5 mg every 2 weeks, which I now know, thanks to this and other fantastic forums, was far too quickly.  I crashed and burned at 25 mg.  I tried inching back up 2 mg at a time for a while, but things kept getting worse, and I ended up back at 40 mg. Unfortunately, the euphoria of the first 40mg never quite returned.

    From that point I followed the minimum 10% rule and reduce on a monthly basis, sometimes a little slower and sometimes a little faster.  More importantly I've learned over time that I really have to keep my activities to a minimum.  At home I pace myself with minor household chores and cooking and do water aerobics twice a week.  My husband and I travel extensively and we do that at a much slower pace.  No more red eye flights or short connect times.  I've resigned myself to asking for wheelchair assistance in airports because my legs won't take me far without a lot of discomfort.

    FYI,I had to take Zoplicone as a sleep aid at the higher doses, which allowed me to get at least 6 hours of sleep.  I went off it several months ago without any difficulty.

    • karen48559
      karen48559 jean39702

      Posted

      Almost like a mirror image. First dose 40 then down to 30 the next day. On 30 for 1 month then he dropped me to 20. And of course as you know wham it all came back and some more. Back up to 30 for another month which was not easy as the palpatations had started by this point. I then asked to drop by 3mg but he wangled 5 out of me. And that's where I'm at. I too doubt my diagnosis. I'm one of those whose bloods show nothing untoward. My symptoms have really been sneaking up on me for a couple of years but I thought wear and tear and aging (I'm 57) but increasingly I kept "hurting myself" doing simple tasks and the stiffness after sleep or rest well you know... I just hope the 2 years I've had count towards my total of the illness! My doc has promised I can go down 10% for a month at a time in just over 2 weeks time. The palpatations have subsided and to a point that agitated restless buzz has softened. The sleeplessness is still ongoing. I tend not to do anything when I get up except eat (hunger is tremendous but getting better) have some herbal tea, read, go back to bed and hope. Or come on here and read through old posts gleaning info and support. I'm loathe to take anything for the sleep just yet in the hope that the lower I go the better it will become. I'm not used to being ill, that's half my problem, so I find myself a very anxious patient. I'm worrying about carbs, diabetes,calcium levels, what suppliments I should take, my blood pressure and on and on. And I'm only at the beginning of my journey. I really have to chill out a bit. Finances are tight due to Graham only being able to work part time so having some Bowen treatment is out of the question at the moment. But you know on the other hand I don't have it as bad as some, I manage to keep at work, and we live in a great place, so I must get my priorities sorted. You don't say what dose you are on currently, but obviously much lower than you were. I hope it continues going in the right direction for you. x
    • jean39702
      jean39702 karen48559

      Posted

      Fortunately, or not, I did have blood markers.  ESR of 168 and CRP of 69 when I had my meltdown.

      I'm currently on 12.5 mg and dropping in .5 steps.  I found my body couldn't handle even the 1 mg drop at about 17 mg.  Slowly and surely I'll get there.

      I too had palpitations, which turned out to be high blood pressure.  I had moderately high pressure prior to PMR and prednisone put it through the roof.  BP meds has settled that down, although it happens from time to time.  Lately, I've come to realize that the palpitations may be from not drinking enough water.

      In the early days I stressed about eveything as well.  Trust me, you will be less anxious as the days go by if you listen to your body and learn how it's managing the activity and meds.  

      And, I can't say enough about the great information and sage advice you will get on this forum and others.  There are some great and knowledgeable people here that have made my journey a lot easier and far less stressful that managing on my own with medical professionals that really just don't get it when it comes to PMR and GCA.

       

    • karen48559
      karen48559 jean39702

      Posted

      Oh 12.5 sounds like heaven to me. My b.p was high when I had the thumpity thumps. 158/115 but he said he wasn't overly concerned over the short term and that it would come down when I reduce. I've been banned from taking it at home for a month to stop me worrying. I normally keep it nice and steady at 110/85 with 2.5 of bendrofluamethiazide. Strangely enough I have devloped a thirst for water. Normally I need to make myself drink so maybe my body is saying something. Your words of wisdom and support as with many here have settled me down nicely today. Thank you. You are correct aabout the forum. I haven't joined any others though. 
    • Anhaga
      Anhaga karen48559

      Posted

      I think there is a Bowen therapist near me, but haven't felt the need to call on him/her yet.  However I am fortunate that the pred I am taking has made it possible for me to gently apply pressure to any aching parts and I find that helps me.  I don't have any idea what Bowen does, but this gentle (can't be more than gentle because it is just my own aging self) massage is better than nothing.  I also find a long soak in a very warm bath with detoxing bath salts and a few drops of essential oil (like tea tree and/or lavendar) is very relaxing.  You might need to use a body lotion afterwards. One of the beneficial side effects of my pred seems to be that the dry itchy skin that has plagued me my entire adult life appears to have cleared up - at least for now.  smile
    • karen48559
      karen48559 Anhaga

      Posted

      Every cloud has a silver lining. Hope it stays away once the pred is finished.
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